Queen of Sleep

Living with narcolepsy: a personal journey

Expert Patients Programme

with 4 comments

The Expert Patients Programme is run by volunteers for the NHS. The people in charge of teaching are themselves expert patients and they have already attended the course. Their leaflet’s catchphrase is: Are you sick and tired of being sick and tired. I was referred by Ingeus but you can ask your GP to refer you or refer yourself. 2,5 hours for six weeks could change your life, especially if you have never come across some of the concepts introduced by this course. I have read so many self-help books that I thought this course could possibly not teach me anything but it did. You get a lovely course book (produced in the US, no surprise that it is good). North America in general have a more holistic approach to health.

By taking part in the course you can learn to manage pain, tiredness and other symptoms. Cope when feeling low or depressed. Find ways of doing things you want to or need to do. Practise relaxation. Find ways to deal with problems. Improve communication skills. Work towards a healthy lifestyle. Learn how to make small changes to gradually improve your life. You use action plans and diaries to make gradual improvements.

The first time I went I have to admit I did not want to be there surrounded by other ill strangers who were struggling to manage just like me. Why would I want to listen to all this misery ? – it made me depressed. The second week, it got a bit better but I was still thinking what I am doing here?.  The teachers were however lovely and I thought that I must have something to learn since attending was making me feel uncomfortable. By listening to others and being listen to in return, I learnt that it does not matter how much theoretical knowledge I have about getting better – improving my overall health – if I don’t take responsibility for myself and start to make changes I will never improve. Change is frightening especially when you are ill because I fight to remain in control of myself everyday. Deliberate change is self-inflicted loss of control.

As the course progressed I saw other patients improve at a rapid rate. This course does not cure you but can help you manage better and you will make great friends along the ways too. And by the way, it is free.

Written by Queen of Sleep

February 27, 2010 at 4:41 pm

Posted in Lifestyle Tips

4 Responses

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  1. Ingeus are Usless and care only about themselves and their 2 week train so called expert advisors and many of the are assie on work permits them selves and can only work 2 days a week.
    I want to know of any one who has had problems with this company or their other named company Work Directions.
    I want to sue them


    September 1, 2010 at 11:30 am

    • Ingeus i.e. former WorkDirections have been very sweet to me. That said, I have had at least 3 different advisors. I attended a multitude of courses (plus point that they are available) – and got in contact with the psychologist at Ingeus. Anyone can make an appointment with her/him. After having explained my situation at the time, we decided that I was not in a position to be applying for work. I attended my compulsionary appointments (pretty useless I must say but the advisors are much better than the Jobcentre) and I have not heard a word since. Ingeus is much better than the Jobcentre. I appreciate that I don’t have to go to the Jobcentre ( – they make me feel like I am the scum of the earth and I ususally end up crying).
      Why, in your experience, is Ingeus useless?

      Queen of Sleep

      September 1, 2010 at 4:33 pm

  2. I Made a valid complaint while on New Deal with Work Directions and they forced me out and promised to reslove the matter so that I could finish New Deal,Not once did they try to resolve anything,Because of this the stress caused me to go on the sick and as soon as I did that I was sent back to Pathway to Work via this Disgracefull company and they did not nothing for me,I have pending legal action coming up in which I will be sueing them and their Disgusting company.

    I dont know the name of your “2 week trained advisors” But I can assure you I was offered any help what so ever and when I asked for any help they kept saying NO,
    They bullied me and I can assure you they have bullied the wrong person.
    Also,as a FULLY paidfor client on Pathway to Work ,I fully intend to make sure that they HELP US clients and Im fed up with Part Time Advisors as this company have many..

    They are disgrace


    September 1, 2010 at 7:42 pm

    • Hi Mike,
      I would join Daily Strenghts’ website and then join the group: narcolepsy in the UK. Post a new topic describing your difficulties with Ingeus and New Deal and see what happens. Perhaps others have been treated similarly and would like to join forces with you….
      I assume you have legal representation? and appropriate support from employers, doctors etc to be able to win your case?
      Have you tried emailing Narcolepsy UK for advice? I know that they don’t have the best reputation but sometimes they can be useful. Do let me know what happens to your complaint-pending legal action against Ingeus!

      Queen of Sleep

      September 2, 2010 at 4:29 pm

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